Reply
Community Manager
Community Manager

AARP Caregiving Summer Break Contest

 

Summertime often means taking breaks and planning vacations. Both of these can be a bit tricky while caring for a loved one.  Have you traveled with your loved one recently or are you planning to?  

Share your experience here and you will be entered in our Caregiving Summer Contest 2018 and could win one of the weekly $100 gift cards or a chance for the overall winning prize of $500 gift card. Your story may be advice or inspirational!

Review rules here:  https://community.aarp.org/t5/Caregiving/AARP-Caregiving-Summer-Break-Contest-2018/m-p/2023713#M67

AARPTeri
22,534 Views
1087
Report
Reply
Periodic Contributor

Hi Jane,

 

You are right, I have attempted all those resources and more. My husband does get a disability check every month. However, it is not enough for one person to live on. We can't pay rent and our utilities bills. I am constantly robbing Peter to pay Paul. I fell way behind on our credit card bills and now our vehicle is junked. It isn't who we are. We never lived liked this. It has forced us to be two people, who we are not. We are prisoners in our own home. It is like I am living in someone else;s body, looking in and watching the suffering everyday. We used to have it all. Nice car, money, bills paid on time, we went to Myrtle Beach for a week once a year, and we had a nice home. He had a great job. He hates not working, but he can't. He will die, if he works. His self-esteem is in the ground because he can not provide for his family. It is not his fault. I have health issues myself. I suffer from 3-5 migraines a week and I have Chrohn's disease. My husband is very fortunate not to have diabetes. His disease is a rare and genetic one.I can hardly take care of myself, but I do and I take care of him too, with pursurverence and hope, faith, and strength. 

We don't know when this suffering will end for us or what will even happen. We know that we can never give up and won't as long as we have each other. It is nice to know that I have a resource (this site) to share my thoughts and feelings. It is good to know that we are not alone. I don'y have the answers. I wish that I did. We need help. Everyone in our familys have turned their backs on us. The bottom line is that they do not care about us and they do not love us. If they did, they would be here  for us. That is ok because I have come to terms with that reality. We cannot think about that. We have to survive. That is all that we are attempting to do.

Thank you for your brainstorming. If you come up with anything, please let me know. It is a little more difficult to find help because of our ages. I have even tried to look for some work at home jobs, but most of them are scams. I need answers for use before we become homeless and just another number.

 

Kind Regards,

 

Sue

658 Views
0
Report
Reply
Contributor

What about a reverse situation? You can't go on vacation without help and do not have any one to go with you? 

1,884 Views
1
Report
Reply
Regular Contributor

My advise would be to seek respite care which is available in most areas. Call your local United Way to get resources avaiable for your situation. They could at least hook you up with a group for caregivers which may help you find someone willing to go with you and.or would be willing to work with you on resolving these issues. Respite is not always expensive and in certain situations and states can be free. It really depends oype of insurance you have and the needs of the person you give care to and what type of insurance you have. Many local agencies are available to help.

Sandi Burkhart
1
Kudos
4247
Views
3,219 Views
0
Report
Reply
Contributor

hands.jpgFor many years now I have been juggling life as a single working mom of two teenagers, a daughter of two wonderful parents who both had become disAbled in their upper years and a sister to a brother with multiple handicapping conditions. The sumer of 2016 was coming up and my mom was getting steadily worse. Already 84, she had been battling Parkinson's and spinal stenosis for about 14 years and Parkinson's onset Dementia was the lastest addition to an already complicated dual diagnosis. My father 88, his hearing had worsened, his wet macular degeneration had already taken away his ability to read and drive and was now making it harder to recognize people and this combination was making his newly diagnosed dementia move at a more rapid place. So, I spoke to my kids and told them I wanted to take Grandma and Grandpa on a farewell tour. (My mom has always had a great sense of humor and she appreciated the play on words.) They were willing and dear friends offered my entire clan to come visit their home near Washington, DC and their vacation home on a lake. So, we packed up the van, medication, walkers, etc. and set out on an 8 day visit to DC and beyond. My friends treated them like royalty and my incredible kids and I took care of their every need....a bit trickier than being at home. They came home with some amazing new memories of Washington, the WWII Memorial, the city during the day and again at night. Grandpa shared stories of the Navy with his two grandkids and Grandma kept us laughing with quick humor. We end with 4 days on the lake relaxing and taking in the sights. My mom could watch the kids water ski and tube from a recliner on a glassed in porch and the sights of the sailboats in the early morning hours were peaceful. Dad was able to get to the dock and take a boat ride, along with my brother. My parents and brother had a tremendous time. It was work, more work than normal for the kids and I, but we had no regrets at the end. Mom passed 10 months later. My girlfriend sent a video clip of their 8 days with them. Mom played it several times and truly enjoyed reliving it. The kids and I talk about it from time to time, and the difficulty of it, but we all realize what a huge gift we were able to give these incredible people we call mom, dad, grandma and grandpa. It has no pricetag.....just love.

Thanks for reading. Peggy

image.pngWWI Memorial family 2016.jpg

Peggy Link
1,902 Views
0
Report
Reply
Contributor

WEEK 1 WINNING POST

 

Live life to the fullest! I used to think about why I couldn't do things and so I didn't. But recently after almost 20 yrs of caregiving for 2 disabled people (my son & father) I now figure out how I can. Accept it won't be what others get to do on vacation but just go! My secret is go to a familiar place so you know what is available ahead of time, carry a transfer chair (lighter wheelchair) every where you go. I have preplanned the trips even to the point of all family members (even the young ones) or anyone else that comes along to help so everyone enjoys the trip. We work as a team. I was assigned to my son and my 14 year old was assigned to my 80 yr. old father when we took our whirlwind trip to the beach. We choose the one thing most important to do instead of trying to do it all. I drove us 5 hrs to the beach stayed one night and drove home but we still talk about our fun adventure!! We met our goal - feeling the ocean breeze and getting to stick our big toe in the ocean! Life is short, don't expect perfect, plan ahead, be patient with each other, take a photo and laugh together often. And the best part...you get to smile every day reliving and talking about those memories forever!!

1,853 Views
0
Report
Reply
Contributor

My mother always loved roadtrips. While growing up we took roadtrips every summer to visit relatives in Michigan and go to the great lakes and camp. After Dad died, we moved Mom two doors down from me in a tiny house. It was just right for her tiny four foot ten size.

 

In the summer she would sit on the porch and we would talk. She loved the neighborhood and her porch, but I could tell she missed taking roadtrips. She had continued to do so with my father after we were all grown, and since he passed away she had not been able to go anywhere except to the doctor or the store. She was on a walker and had oxygen now, so it was difficult.

 

I had some time off that last summer before she died, so I decided to see if she wanted to take a roadtrip. She was so excited! Since I am a nurse, I knew I could handle things if she got sick, and this made he more confident to travel. Her only request- to take my neice along since she wanted her to experience the fun too.

 

So my son, my neice, and Mom and I all went to Niagara Falls. The weather was perfect. It was amazing. I had not seen my mother so happy in a long time. She could not walk very far, but she sat and enjoyed the scenery while I showed the kids around. I took lots of pictures.

 

It was my mom's last roadtrip, but it was one of the best. I will always treasure that memory. Just all of us together having fun, taking a break from bills and doctors and worries. It was perfect.

1,682 Views
0
Report
Reply
Periodic Contributor

Hi. I am the elderly person in this story. Although I feel I am fine on my own, I totally understand my children's worries. I had the same issues with my own Mom. I was invited to join them on their vacation, but I just wasn't feeling up to the long drive and days on end with 10 little ones! I love them all but sometimes it's just to much. So, I researched and I found a senior living community in my area the holds  an apartment in their community especially for times such as this! We rented it for the 2 weeks for me. It was comphy and clean and quiet and safe! My kids and grandkids could go away with full confidence that I was safe and secure and happy! Maybe not the perfect solution for some but it sure was for us.

1,663 Views
0
Report
Reply
Contributor

It sounds absolutely terrible, I know, but I am TIRED of hearing people tell me how lucky I am to still have my parents. I KNOW that. What they don't KNOW is that it comes at a very high price to my own well being. Even when I am not dealing with my parents needs hands on I am drilling taking care of something for them daily. No true vacations because I still get calls about this that or the other when I am away. It's like having your toddler live alone. I am her sad, angry and depressed about this whole situation. Both my parents are very needy. Both are severely I'll and elderly. My husband and my friends are my support. 

1,604 Views
2
Report
Reply
Periodic Contributor

Hello,

I am so sorry that you are sad, angry, and depressed. I do understand. Is there any way that your husband and friends could relieve the pressure from you more? Maybe, allow you to have a day or even few hours for yourself. You could have a "me" day. Go to the spa, shopping, etc. It is just a thought. Hope all works out for you. You are in my thoughts.
Kind Regards,
Sue
3,262 Views
0
Report
Reply
Regular Contributor

What you’re saying is not terrible at all - it’s the truth! People are afraid of saying it, that’s the problem. My blood pressure was up all the time the last 1.5 years my mother was here. I thought I was going to be in a very bad situation health-wise from it all. I said to my brother “If she could see herself right now, she’d say ‘let me go!’ It’s a terrible situation for everyone concerned. I’d say do the best you can and don’t stop yourself from swearing and cursing every day! You’ve earned it.

1,598 Views
0
Report
Reply
Contributor

Since my mom is at home with us, any kind of long vacation is not really possible right now. But since she started hospice care and because we have a network of AMAZING friends helping out, my family takes time to be together. Some weeks it is just going out to dinner while someone is at home with mom. During the summer months we take advantage of the things going on in our city - special nights at the botanical garden, events at the museums - and my husband and I were recently able to have a date night, thanks to our oldest daughter and a great co-worker, that included dinner and concert tickets! The most important thing is to try to build your network of family and friends that are willing to help out once in awhile to give the caregiver a break, no matter how small. To all those who are caregivers, remember you are not alone!

1,896 Views
0
Report
Reply
Periodic Contributor

My husband and I are finally getting a vacation away from home after three years of no vacations in order to relocate closer to my mom with dementia. I filled her mediplanner up for the whole week, took her to her medical appointment and my niece is on call if she needs anything. Going to Best Friends Animal Society in Utah to volunteer. The animals will boost our spirits and make us smile!

1,908 Views
0
Report
Reply
Contributor

Just listening to the little wheels on our carry on bags clicking on the tile floor of the hotel lobby was a cause for excitment!  Reservation had been made and needs had been expressed, (handicapped room as they call it with a small refrigerator). With keys in hand, we took the elevator ride up to our summer escape!! We both sunk into the down-filled comforter & took a deep breath, or was it a sigh. 

 

Since my husband has been diagnosed with Parkinson's 4 years ago, travels have been difficult. Along with the physical manifestations come the mental challenges such as anxiety, paranoia, depression, mental confusion, and even hallucinations. As a caregiver, I feel as if I'm always, "on call".  Health care workers have shifts, caregivers do not!  I have found that I leave many a task unfinished around the house so that I can tend to an immediate need. Nevertheless, with the help of medication, his situation improved & we decided to take a summer break! 

 

Oh, and by the way, the hotel with the amazing balcony view of the courtyard pool and fabulous room service meal was only 4 miles from our home! It was the 4th of July and the parade went directly in front of the hotel. We watched the patriotic floats, bands, and beauty queens pass by until fatigue set in and so back into our beautiful oasis we retired. In the afternoon we took a short walk  downtown, an area which brought back many happy memories, then later that evening after a lovely afternoon nap, we went to the top of the parking garage with other guests to see the city fireworks! The evening was capped off watching late night movies on TV until sleep deprived us of learning, "Who done it"!

 

The next morning after sleeping late and enjoying a leisurely breakfast, we packed up our little suitcases and bid one and all good bye. As our little luggage wheels clicked on the tile lobby floor approaching the parking garage, I felt that this short respite had recharged my battery and had given us some much needed quiet time without all the interruptions of daily life at home.  No, caregivers don't have shifts, but even a minor shift for 48 hours can remind us that we can still enjoy those hazy, lazy, crazy days of summer with those we love when they need us the most. 

1,930 Views
0
Report
Reply
Contributor

I am 63 and have been the caregiver for my 31 year old son who received a TBI almost 7 years ago. This is not my first time as a caregiver as I was married twice and each had cancer and my mom had Alzheimer’s. My son is difficult to handle because of cognitive reasoning and Executive function problems. His behavior when he does not get his way is like a toddlers meltdown. The only thing that calms him and keeps him mellow is his medical marijuana ( it treats his seizures also) Because of his OCD behaviors and his marijuana use makes traveling or staying anywhere impossible. So basically vacations are a thing of the past . He used to sleep days and up nites for over 6 years and has just started having a more normal sleep patterns. I always say never say never though.

2,048 Views
0
Report
Reply
Contributor

THIS IS OUR WINNER FOR THE OVERALL CONTEST!!

 

I am a mother of a 16 year old twins, a boy and a girl. My son is on the autism spectrum. Vacationing was always a challenge for us, especially when he was small. I remember going to a water park one vacation when he was around 8 years old. There where lots of rides, kids screaming and laughing and splashing and tons of trinkets to buy. On the way to the park we talked about what he could expect and what it would look like so he would be prepared for all of the different stimulation he might experience. I prayed he would not get too over loaded. We were there about an hour and he was doing until he saw the arcade. I saw the melt down before it even began. He ran to the arcade and started to demand the attendant let him see and touch the prizes. He was talking fast, wringing his hands and I knew...time to go! My husband was behind me with the keys and my daughter had our beach bag and towels, they saw it coming too. My husband handed me the keys and my daughter and I began to walk towards the exit. I turned around and my husband had scooped him up and out of his pocket he took a small green ball, alot like one of the prizes you could win at the arcade and he showed it to my son while he held him and walked out of the arcade. My son took the ball and began to calm down. I was so grateful for my husband being so on top of it that day. We did leave the park and didn't go back for a few years but I still cherish that memory of my husband holding my son and diffusing that situation.

2,073 Views
0
Report
Reply
Contributor


@AARPTeri wrote:

 

Summertime often means taking breaks and planning vacations. Both of these can be a bit tricky while caring for a loved one.  Have you traveled with your loved one recently or are you planning to?  

Share your experience here and you will be entered in our Caregiving Summer Travel Contest 2018 and could win one of the weekly $100 gift cards or a chance for the overall winning prize of $500 gift card. Your story may be advice or inspirational!

Review rules here:  https://community.aarp.org/t5/Caregiving/AARP-Caregiving-Summer-Break-Contest-2018/m-p/2023713#M67



@AARPTeri wrote:

 

Summertime often means taking breaks and planning vacations. Both of these can be a bit tricky while caring for a loved one.  Have you traveled with your loved one recently or are you planning to?  

Share your experience here and you will be entered in our Caregiving Summer Travel Contest 2018 and could win one of the weekly $100 gift cards or a chance for the overall winning prize of $500 gift card. Your story may be advice or inspirational!

Review rules here:  https://community.aarp.org/t5/Caregiving/AARP-Caregiving-Summer-Break-Contest-2018/m-p/2023713#M67


2,041 Views
3
Report
Reply
Newbie

Helping care for my 96 year old mother, my 4 brothers pass everything on to "the girls" and me .  There are 3 of us, 1 is disabled, 1 lives 1500 miles away...  thank heavens for my daughters who live nearby ( son is in another state but visits & helps when he can) to give me a break.

442 Views
0
Report
Reply
Regular Contributor

How do I make a post on this topic?

Sandi Burkhart
0
Kudos
4246
Views
1,550 Views
1
Report
Reply
Contributor

Hi, Sandi! You just posted to the topic! Just hit the Reply or Quick Reply button to bring up a text box, type your response and hit the Post button. Good luck!

1,544 Views
0
Report
Reply
Periodic Contributor

  1. I   have  never been on any vacation,  at  67 and 10 months,   sounds good,  and I have often  think about it,  but deep down inside I cannot trust anyone with my autistc son or my daughter  who suffer with seizures wh3n she sleeps,  then it comes with where am I going to get money to even travel,  on a fix income retirement, It is and not easy at all, so I h@ve learned to be thankful for the little enjoyment we share with each other,  the small things,  love, love love it all narrows down to.
2,048 Views
0
Report
Reply
Regular Contributor

I did not take my mother, who died from Alzheimer’s just  this past November, anywhere. I took time for me, usually a weekend. It was a great ‘pick me up’ and I felt some relief when I got home. I strongly encourage everyone who’s a caregiver, if possible, to get out of the house, even if it’s just for lunch. You desperately need ‘me time’ with all this going on.

2,091 Views
0
Report
Reply
Contributor

My hubby's family has taken care of people in need for generations.  What I am most impressed by them is the relationships they've built with the community.  For example, they have even used the same vacation cabin for so long, the owners renovated it to make it more accessible over the years.  Thank you!

2,141 Views
0
Report
Reply
Contributor

I take care of my boyfriend and he has COPD and Emphysema and its hard to take vacations and traveling far. So I like to things that he likes to do. The one thing he LOVES is fishing so thats what we do. So i think my advice would be to do something that the loved one you are taking care of likes to do.

2,413 Views
0
Report
Reply
Contributor

I have been the primary caregiver for my mother for over seven years, with support from my brothers and sisters.  My mom had a stroke one year and a year later, fell against house brick and suffered a hematoma which required emergency brain surgery.  Since then she has been doing relatively well, with some dementia at 93.

We just returned from our family reunion in Ohio  My mother is the matriarch of the family, with five children and no remaining siblings.  She enjoyed the reunion and did well with the trip and activities.  I expected her to very confused and easily tired.  There was some confusion, but overall she lived in the moment and loved every minute of it.

I had a nice time and was able to relax and enjoy family.  My brothers and sisters and in-laws and mom's grands were all helpful and supportive.  She can walk with a walker, however, we used a wheelchair to get her around .  It worked out very good.

What helped me to not get stressed out before the trip was to start packing a week prior to leaving.  That way I was able to think through what I needed to take for all occasions.  I didn't overpack and had everything we needed.  

I'm rejuvenated and she's tired.  We both have been resting since returning home. We thank God for His many blessings!

MLB

7/19/18

 

 

2,933 Views
0
Report
Reply
Contributor

My mother has not had an easy life.  Her father was an alcholic.  My father had a very sever stroke at 45 and died at 49 and she was only 46 when she became a widow.  In her 60's she met a wonderful man and remarried.  They were only married a short time when he was diagnosed with leukemia.  He died just a couple years later.  She has been a caretaker for boths husbands.  I am an only child and my mother and and i are very different.  I am very soft hearted just like my dad was and she is quit the opposite.  She has always said whatever is on her mind. For example:  I have been overweight my entiure life.  I joined the local water aerobics class and I also joined for her.  I thought it would be a great time to spend together.  The first time that we went she told me how awful I looked in a swim suit. Needless to say but I never went back. Now she has dementia and I am responsible for taking care of her.  People see her behavior now and say things like "Oh you have to understand that she doesn't understand what she's saying".  They don't understand that she has been this way my entire life. It's not the dementia.  She is still in her home and lives alone. My husband and I are only about a mile away so I check on her frequently.  People are quick to give advice when they haven't been in your situation.  I take one day at a time and so far she has not done anything dangerous so I think she is better in her home than anywhere else.  I still work full time and am not able to retire for a few years yet.  It's hard when she calls at all hours the night.  Sometimes she is asking about people who have died. "My mom is dead isn't she?".  My husband and her do not get along.  We have been married 35 years and he has seen all tyhings that she has done and said to me and can't get past it.  She's my mom and have to do whatever I can to take care of her.  Even her physician told me "You better put your big girl pants on and tell her what she going to do. She doesn't need to be alone."  Easier said than done.  I can't believe I'm even saying this but I can't get past the anger.  My father owned property that was left to him by his parents. I was only 20 when my father died and I grew up in a home where you didn't discuss finanaces.  Many years after my fathers death I received some information that really threw me.  A cousin asked me what I did with the money that I received from the sale of the land. I never received any money.  She told me that the land was supposed to be passed down to me when my father died.  The land was sold by my mom to my fathers brother.  So I couldn't get past it and I went for a walk with my uncle and I asked him.  He was very upset.  He said that my mother told him that I did not want the land.  He mailed the check to me.  I never got or knew anything about it.  My mom kept it ($20,000).  To this day she doesn't know that I know.  Her money is very important to her. If I confronted her about it she would never speak to me again. I know that it sounds terrible but I don't want to spend all her money on Long Term Care.  Hoping that atleast I could get it after she passes away but apparently that will not happen.  Would love to use it to help my grandchildren with college tuition.  She went to the bank and told them that I was stealing her money out of her checking account.   The bank knows the situation and called me to let me know. They sat with her for 2 hours and went over her entire account and told her that no one except her had done anything in her account. So, I continue to do what I need to.  I try to push push the anger and resentment down.  I recently took her out of state for 10 days to her family.  My husband and I need a break.  This puts so much stress on our marriage.  I would be so excited and relieved!  Thank you.

3,544 Views
6
Report
Reply
Contributor

I am so sorry you have had such a difficult life with your mother! You are justified in your anger with her and you are a wonderful daughter to continue to care for her in spite of all the things she has done to disabuse your trust. I would advise you to find a counselor to talk to, because you do not need to keep all that anger and sadness inside. You might also check and see if there is an agency, like Visiting Angels, that can spend time caring for your mom and give you and your husband a break, even for a few hours. After you have had a chance to speak with a counselor, I would let your mother know that you found out about your inheritance from your father and what she did. Perhaps she will be able to give you a reason for her actions, so at least you have an answer. But that decision is up to you. You are obviously a strong, caring. loving person. I will keep you in my prayers!
1,897 Views
0
Report
Reply
Periodic Contributor

Thanks for sharing, love your story, all about love, 😇👍🏾
2,568 Views
4
Report
Reply
Newbie

I just go and offer my time.  I will take her outside in the summer.  It's an assisted living facility so that does make it easier

352 Views
0
Report
Reply

yeah

432 Views
0
Report
Reply
Contributor

I love taking breaks by taking Mom to visit her friends and enjoy listening to their stories about their lives.

380 Views
0
Report
Reply
cancel
Showing results for 
Show  only  | Search instead for 
Did you mean: 
Users
Announcements

Ask the Expert: Juggling Caregiving Amidst Coronavirus this Holiday Season

Join AARP's Family and Caregiving Expert Amy Goyer to uncover the best ways to navigate the holiday season with your loved ones. Ask and Learn Now.

AARP Members Only Games

Was Breakout your favorite Atari game? Ready to knock out some bricks? AARP Members, now's your chance.

Don't let the ball hit the ground!
AARP Members Only Games Atari Breakout
Music and Brain Health

From soft jazz to hard rock - discover music's mental, social and physical benefits.

Learn more now.
/html/assets/SS-Marketing-Image-300x155.jpg